My husband of nearly 35 years was finally diagnosed as dementia with Lewy bodies in March 2013. He is 82 years old, 22 years my senior, and prior to a TIA in Feb 2011 had always been in great physical shape, mentally bright, and healthy! A few months after his TIA he began to decline. An avid reader and crossword puzzle aficionado, he began to have trouble doing either activity. He had always been good with tools and building things, in fact, he built three houses with his own hands since retiring 20 years ago! He began to have difficulty understanding how to use tools, how to drive, how to do much of anything. He loved to garden, fish, travel, go to movies, interact with our friends. In the past two and a half years all of those loves have faded away.

I have witnessed an incredible roller coaster of his behaviors, emotions, limitations since he began to hallucinate and become paranoid during the summer of 2012. He was prescribed seroquel in September 2012 which has helped, but is not perfect. I have had many nights where he is up and wandering, a few times he has fallen, most of the time he is either unfamiliar with his surroundings or is doing busy work - moving things around in the house.

Two of the most difficult aspects of his condition have been capgras syndrome in which he does not recognize who I am and his difficulty in communicating to me in english. His native language is spanish, and although he has been well educated with a college degree and has spoken wonderful english as long as I have known him, he constantly slips into spanish. I have only a rudimentary understanding and often am at a loss as to what he is telling me. This is extremely frustrating for both of us.

The capgras is even harder to deal with, especially when he thinks I am a bad person out to harm him. He has tried to exit the car as I drive down the highway a couple of times. He has left our property and headed to town a few times. We live in a rural area and it is several miles to town! I finally put a lock on the gate, and the property is fenced, so he can't get out. I signed up with medic alert and put a bracelet on him just in case he gets away.

Once the neurologist made his diagnosis of LBD last year I read everything I could about this horrible disease, including finding the LBDA website and this remarkable forum.

I understand that much of what he is going through is beyond his control. There have been times when he is almost himself, as sweet as in the days before this disease took control. But more often then not there are the endless hours of him wanting to "go home", insisting that I am not his wife, mad at me because I won't take him to his "casa". At the early phase of LBD he was overly concerned with finances. Now his only worry is "where is my wallet", taking out the few dollars in it and asking me to count the money for him. He has trouble staying focused on a movie or tv program. Sometimes he talks back at the tv. He has tried to lock me out of the house a few times, has accused me of taking money, or having "friends". He often sees other people around, even talks to them sometimes. The other night he was afraid to go to bed because he saw a donkey laying in it!

I have made sure to get our legal and financial needs in order, and am fortunate that my husband worked in the health care field for many years and has friends that are available to advise and help us, but none of them live near by. Following his retirement we moved about two hours away from the big city, so we do not have a lot of friends or relatives close by. So I am mostly on my own right now. I take care of the house, of him, the huge yard, and try to limit any shopping trips to those few mornings where he is fairly calm. We rarely visit friends anymore because his mood can change so quickly. So it gets a little lonely out here.

Thank you for letting me get some of this out. Although I have a handful of people to call and keep me sane, I hate to bother them too often. They have their own lives and I do not want them to worry for me. Here in this forum though, all of us can relate to what is happening. For us, this has been the most difficult challenge ever in our life together. And I have accepted that our lives will never be the same.

Thu Jan 16, 2014 1:56 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: The Toughest Challenge Ever

Welcome to the forum! Thank you for sharing your experiences with us. Most of us can relate. My husband and I went through Capgras for several years and it was probably the worst aspect of the disease for me--and possibly for him. The notion that I was an impostor was so frustrating, especially since he kept asking where his real wife was. And there were incidents of hostility and violence during this time. After all, he assumed that I, being an impostor, must be up to no good. He also sometimes believed our house was an impostor, too, and kept wanting to go to the 'other house'. The only comfort I can give you is that this phase of the disease eventually fades. God bless!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Jan 16, 2014 2:30 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: The Toughest Challenge Ever

Welcome and I am sorry for the situation you are both in. It is not easy, but at least you have done your research and know a lot about the disease, which is probably a help to have information about what's happening, what to expect, etc.

Would it be helpful for you to be in a place where you have more support and so does he? Moving isn't fun, it's a lot of work, but it sounds like you are feeling very isolated and are indeed pretty isolated from friends and family. At least with this forum you have a whole community of support at your fingertips - we're only a posting away!

I hope you can find ways to get some respite and take care of YOU. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Jan 16, 2014 3:39 pm

samdeecal

Joined: Tue Jan 14, 2014 9:34 pmPosts: 6

Re: The Toughest Challenge Ever

Thank you for your kind comments. There is the very real possibility that we may have to move back to the big city in the coming year or ?. Most of hubby's medical doctors are based there, and we do have a small rental home there conveniently next door to one of the kids, that we could take back for personal use if the need arises. If he gets to a point where I can no longer handle him physically that will be our deciding point.

I would love to see the capgras go away. It has been very ugly at times, sometimes it is almost funny, but of course, I do not laugh when he calls me by his sisters name! It is really weird when he believes I am a previous wife (he had been married and divorced a couple of times before we met) and he is sad that I (she) left him. At first I would insist I was not her, but eventually I gave in and would respond as if I was her. That was easier for him to think she was here for him.

Sat Jan 18, 2014 11:10 am

gailabbi

Joined: Sat May 25, 2013 3:53 pmPosts: 330

Re: The Toughest Challenge Ever

Welcome to the forum! You sound like you have things well under control with a plan for what to do if things become too much for you, etc. That's excellent as it takes a lot of the worry about what to do next off of you and you have enough on your hands just dealing with the day to day. I never knew it was called capgras but my mother had it for a long time. It was soooo difficult for my Dad but he and I and the rest of the family did have some really good laughs over some of the things Mom would come up with. You really can't but laugh - and it feels sooo good to get it out! And of course we'd always explain something to Mom so she never felt we were laughing at her just with her. And I did find that going along with Mom on some of her delusions and then slowly side tracking her was the best way - least traumatic way - of dealing with those times. We have to make the best of what we've got to deal with!!

_________________Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

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